Thank you! and, Driving?

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Hi guys :blush: Short story here :laughing: If you’re just looking for the question, feel free to scroll down- it is at the end of my tale, hehe!

First of all, I am so thankful for this website and all the knowledge and experience you guys bring to the table in regards to Chiari! I have never posted, but spent many hours researching on here, reading other’s stories, and taking heart that I may not be crazy! :wink: The actual symptoms that can go along with this malformation, as opposed to what the drs tell you are “normal” symptoms, can differ so greatly. As other Chiari warriors/caretakers have said, it truly helps to not feel alone! Thank you for sharing your experiences. :heart:

I was finally diagnosed in 2019- After beginning at age 10 with what seemed like a heart attack, I have had a long history of health challenges for the past 17 years since (the symptoms finally all made sense after the Chiari diagnoses! :joy:) I almost went home to heaven three times, but God must have a plan for me to stick around a little longer!

I have a 15mm herniation but have opted to wait on surgery, due to my decompression surgery being cancelled because of covid, and honestly not having peace about it/feeling like the Lord closed the door, at least at the time. When I was first diagnosed, my symptoms were then pretty extreme, accompanied with anemia. After 2 years of challenging symptoms, however, for the past 8 months I’ve been feeling almost pretty “normal” most days; at least as far as that goes, right?! :joy: It has been a huge blessing, that I’ve improved over the past year, instead of getting worse! Praise God for praying friends and family! I still have flare ups, like this past week, but overall am so much better. I also lead a very active lifestyle on a farm with goats, training dogs, etc. I believe God’s grace, exercise, getting enough sleep and drinking lots of water helps greatly, at least in my experience! :relaxed::raised_hands:t2:

Anyways, here is my question: Is anyone else apprehensive about driving? Car rides nearly always make my symptoms flare up. I finally feel well enough on a consistent basis to now drive again after a few years, but still feel a bit nervous. Others lightheartedly tease me that I’m being overly cautious, which they’re probably right :joy: I’m just a little concerned I won’t be able to focus on so many things at once, and the thought of making a mistake and causing harm to others is terrifying to me. I find it difficult to explain to others why driving again may be a challenge. One of my issues is that the headaches can come on so fast, that I’m worried I will kind of “freeze up” with pain. Anyone else struggle with being afraid of/or experience brain fog or flare ups of other symptoms while driving? Anyone have any suggestions as to what may help?

Thank you friends! I know this can be a super rough journey at times. Praying :pray:

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Hi. I’m with you on the driving. I’m scared something will happen and I would hurt a bunch of innocent people. I’ve had two light strokes and partial seizures. I can’t turn my head to look behind me to back a truck up so I stopped all together.
I had a doctor back in 2020 right at the peek of covid, in Jan when nobody was ready or taking it serious. She sent a resident doctor in to look at me, she ignored everything I said. Then her boss popped her head for literally 3 second asked y’all doing ok? Yep and she was gone. She had the nerve to tell me what I had was normal I asked her since when has it ever been normal for someones brain to dislodge and be displaced out of the skull? I actually stumped her.then they gave me a pneumonia vaccine and it went after my lower backmy spine. Never recovered legs and back are so weak painful to stand longer than a minute. I was diagnosed in 2012 from a car accident. In 2017 I fell backward and my head connected with a tree root that’s when I started having symptoms back to back like boom boom boom.
Here’s something you may want to bring up to your doctor before surgery. I’ve read in a medical journal if you hold the headaches in front of the brain the surgery will do no good, will make symptoms far worse. But the back of head headaches show a good prognosis.

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Hi Marie, thank you for your reply. It’s good to know I’m not the only one who doesn’t dig driving :laughing: though I’m sorry for your sake that you’ve had to give it up.
Wow that must’ve been very hard and frustrating for them to dismiss your symptoms like that! :grimacing: Were you able to get a 2nd opinion?? That is so crazy too about the pnumonia shot and it’s adverse affects! Do you know what caused the side effects? I’m so sorry, that must be super hard! :grimacing:
Thank you for the info on the headache position in regards to surgery. I’ll definitely look into that further if surgery is an option again in the future.

:pray::pray::pray:

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Yes, I have concerns about drive before and now after surgery. Time helped - I still do not drive out of the city and do watch how much I do in a week as I find it tiring. What has helped with my endurance, is concussion-based exercises like vision therapy and vestibular processing. This helped with eye fatigue and being able to “see” things better and not get dizzy with movement.

To help with head, neck, shoulder and upper back, I did graded motor imagery though not everyone needs that, rolfing, cranial sacral work - not lots, muscle trigger work, motor control exercises, and most recently positional release for my upper back and shoulders. Amazing improvements in shoulder checking!

I found that I just started with something, used it until I did not see anymore improvements then moved on to the next treatment option that came my way. My experience is that different approaches brought different relief, but I was more focused on long-term lasting improvements. Chiari complexities do not lend themselves to a magic bullet solution.

Start with something and see how it goes. i have found that garden-variety massage therapists and physical therapists do not have enough skills. Good luck in furthering your recovery post-surgery.

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Hi,

I am new to this group, but I am curious by what you mean when you say ‘freeze up’ with pain. My neurosurgeon is testing me for seizures currently, which I suspect are actually a symptom of a Chiari. I will have a feeling of pressure in my head for a week or two on end, but sometimes, when I have been active or moving my head from side to side quickly, I get this strong vertigo and a rush in the back of my head and neck that washes over my head. I can’t move or speak for 30 seconds or more. I am slow to recover after that.

I hope you are doing better now with driving and have found some relief for your symptoms.